Engagement in a newly launched online support community for complex regional pain syndrome: membership growth, header analysis and introductory messages

Smedley, Richard M.; Coulson, Neil; Gavin, Jeff; Rodham, Karen; Watts, Leon

doi:10.1504/ijwbc.2016.077259

Cited by 5 publications

(9 citation statements)

References 46 publications

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“…Thus, we need to explore and describe the characteristics of users and describe the content of the Web-based interaction in an ISG provided to LSF patients, to inform future design and use of such interventions to this patient population. In addition, most studies exploring the use of ISG use already established forums, and little is known about newly initiated forums [37].…”

Section: Introductionmentioning

confidence: 99%

Lumbar Spine Fusion Patients’ Use of an Internet Support Group: Mixed Methods Study

et al. 2019

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Background Internet use within health care contexts offers the possibility to provide both health information and peer support. Internet Support Groups (ISGs) for patients may offer advantages, which are not found in face-to-face support. In patients undergoing lumbar spine fusion (LSF), ISGs could have a particular potential, as peer support on the web might bridge the decreased satisfaction with social life and social isolation found within these patients. ISGs might in this way contribute to increasing the functioning and overall health-related quality of life. However, LSF patients may generally belong to a group of citizens not prone to internet and online peer support. However, our knowledge of how LSF patients use ISGs is limited. Objective The aim of this study was to describe the characteristics of users of an ISG and thematically explore the content of ISG interactions in Danish patients undergoing instrumented LSF because of degenerative spine disorders. Methods Participants were recruited from a randomized controlled trial and included in a prospective cohort with a mixed methods design. Sociodemographic characteristics and information on psychological well-being (symptoms of anxiety and depression) were obtained at baseline and 1 to 5 weeks before surgery. Usage of the ISG was registered from baseline until 3 months after surgery. All posts and comments were collected, and content analysis was performed. Results A total of 48 participants comprised the study population, with a mean age of 53 years (range 29-77). Of the participants, 54% (26/48) were female, 85% (41/48) were cohabitating, 69% (33/48) were unemployed, and the majority (69% [33/48]) had secondary education. Approximately one-third of the participants had symptoms of depression (35%, 17/48) and anxiety (29%, 14/48). Overall, 90% (43/48) of the participants accessed the ISG. No correlations were found between sociodemographic characteristics and access to the ISG. Women were more prone to be active users, contributing with posts ( P =.04). Finally, active users contributing with posts or comments had viewed more pages, whereas passive users, users without posts or comments, had more interactions with the ISG ( P <.001). The ISG contained 180 conversation threads, generating 354 comments. The 180 conversation threads in the ISG were constituted by 671 independent dialogue sequences. On the basis of those 671 dialogue sequences, 7 thematic categories emerged. Conclusions Sociodemographic characteristics were not predictors of ISG use in this study, and active use was found to be gender dependent. Content of interactions on the ISG emerged within 7 thematic categories and focused on social recognition, experience of pain or use of pain medication, experience of physical activity or physical rehabilitation, expression of psychosocial well-being, advising on a...

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Section: Introductionmentioning

confidence: 99%

Lumbar Spine Fusion Patients’ Use of an Internet Support Group: Mixed Methods Study

et al. 2019

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“…Researchers have examined many aspects of OSCs including the socio-demographic and medical profile of members [5,6], how new members introduce themselves [7,8], the benefits and disadvantages of engagement [2,9], what kind of social support individuals exchange [10,11], and empowering processes that can arise from using them [9,12].…”

Section: Introductionmentioning

confidence: 99%

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

Smedley

Coulson

2017

Patient Education and Counseling

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Objective: To identify and describe the activities performed by online support community moderators.Methods: A total of 790 messages were downloaded for analysis. Messages were written by 59 moderators from 6 forums that represent a diverse range of conditions (arthritis, complex regional pain syndrome, Crohn's disease, depression, diabetes and Huntington's disease).Results: Thematic analysis revealed four themes: supportive tasks involve providing help to members, moderators sharing experiences shows how they use forums to fulfil their own personal support needs, making announcements about new discoveries and upcoming events, and administrative tasks such as enforcing rules and deleting spam. Conclusion:These results are consistent with the helper-therapy principle and provide a new insight into the diverse and varied range of activities carried out by moderators.Practice implications: Moderators perform many roles, including using forums for their own support needs.

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“… 31 These authors considered an “open message board” to be a public domain and an online forum environment, where people contributing to the forum can be expected to be aware that other contributors or online “lurkers” (a person online observing but not participating in forum discussions) will have access to the messages that have been posted on the forum. 40 , 41 In the current study, forums were eligible for inclusion if they had “public access” (visible to anyone with access to the Internet who is not necessarily a member of the online forum). This is consistent with established published ethical guidelines, 16 which suggest public domain data can be used for research purposes without the need for informed consent from participants.…”

Section: Methodsmentioning

confidence: 99%

“…However, these relate to adult use of forums rather than parental use. 17 , 32 , 40 - 41 Little is known concerning how parents of young people with CRPS use forums, and in particular, how support is solicited, offered, and received in these online environments. Consequently, as much is already known about parental impact of parenting a young person with chronic pain, 25 there is a need to move beyond examining forum content concerning parental impact and experience and to focus on parental communication styles, specifically, how communication is sought, provided, and maintained by parents of young people with CRPS.…”

Section: Introductionmentioning

confidence: 99%

Parenting young people with complex regional pain syndrome: an analysis of the process of parental online communication

Navarro

Wainwright

Rodham

et al. 2018

PR9

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Introduction:Parenting a young person with complex regional pain syndrome (CRPS) is associated with high levels of parental distress and numerous emotional, informational, and practical challenges. To meet these challenges, parents seek others undergoing similar experiences, both in face to face and online forums.Objectives:The objective of this study was to conduct a qualitative analysis of online forum data to explore the process of parental forum communication regarding parenting a young person with CRPS in online spaces.Methods:A total of 107 forum posts relating to parenting a young person with CRPS were collected from 39 users across 2 public forums. Data were analyzed using thematic analysis.Results:Findings identified 2 themes: “the informal rules of exchanging and receiving network support” and “parents positioning themselves as experts.” The first theme highlighted the varied nature of support sought and provided by parents in addition to social rules associated with the negotiation of this support. The second theme represented an understanding of how parents presented themselves as experts in their young person's pain, both in relation to fellow parents and health care professionals.Conclusion:This study provided a novel insight into support and communicational exchanges between parents of young people with CRPS on online public forums. Findings identified the perceived usefulness of online spaces in terms of parents of young people with CRPS seeking and providing support. Further research can helpfully investigate how we might implement online peer mentoring to improve support further for parents.

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Engagement in a newly launched online support community for complex regional pain syndrome: membership growth, header analysis and introductory messages

Cited by 5 publications

References 46 publications

Lumbar Spine Fusion Patients’ Use of an Internet Support Group: Mixed Methods Study

Lumbar Spine Fusion Patients’ Use of an Internet Support Group: Mixed Methods Study

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

Parenting young people with complex regional pain syndrome: an analysis of the process of parental online communication

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